Supplement combination/effectiveness

Posted by wisfloj @wisfloj, Sep 27, 2019

Ergomax brand PEA was working so well after 9 weeks of 1200 mg. Per day, thought I was 'cured'. Pain and burning was rare and brief! Then…it comes back. Who would one go to in order to find out if supplements are cancelling each other, overkill in combination taken etc.? I take alpha lipoic acid in the R-ala form, acetyl L carnitine, turmeric and B12. Continuing with PEA since I stocked up! Medical doctors? doubt it, health food stores? Probably sell you more stuff! How do you find a chemist or biologist perhaps? Thanks for any advice.

Liked by rwinney

@johnbishop

@terrydclaar, I've been taking the groups protocol of supplements since Sept 2016. I posted my story and how it's helped me in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

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John, is the vitamin/mineral protocol available without going through facebook group? I would like to avoid facebook if possible. Thank you

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@rramsey

John, is the vitamin/mineral protocol available without going through facebook group? I would like to avoid facebook if possible. Thank you

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Same question, I was just looking at the site but do not 'do' Facebook, at all. I do see the protocol/supplement list and realize we do what we think is best for us, but high amounts of b12 and D seems questionable unless you’re low in them. And this is a lifelong regimen I assume? Thanks, Joannr

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@wisfloj

Same question, I was just looking at the site but do not 'do' Facebook, at all. I do see the protocol/supplement list and realize we do what we think is best for us, but high amounts of b12 and D seems questionable unless you’re low in them. And this is a lifelong regimen I assume? Thanks, Joannr

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LOL oops-Joanne

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@rramsey

John, is the vitamin/mineral protocol available without going through facebook group? I would like to avoid facebook if possible. Thank you

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@rramsey, @wisfloj — I actually answered the same question from @rramsey when it was asked in another discussion. You might have missed the notification email. Here's the post – https://connect.mayoclinic.org/comment/335387/bookmark/

Short answer – no, you don't have to be a member of the Facebook group since all of the links are on their website to try it.

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John or anyone: I have a question – since I have read that idiopathic SFN can have been brought in by a virus is it at all possible that a flu shot or shingles shots can have a negative effect on our neuropathy? I am afraid of having either and my internist cannot say positively yes or no. I have not as yet asked my neuro. Helen

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@helennicola

John or anyone: I have a question – since I have read that idiopathic SFN can have been brought in by a virus is it at all possible that a flu shot or shingles shots can have a negative effect on our neuropathy? I am afraid of having either and my internist cannot say positively yes or no. I have not as yet asked my neuro. Helen

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Hi @helennicola — I have idiopathic small fiber PN and participated in a Mayo Clinic Flu study last year and received the shot. I've also had them in the past with no side effects. I haven't got the shingrix shot yet but am thinking about it. I am going to get my flu shot but have been a little lax taking the time to get it so far. Here's some information that may help alleviate (or not) your fears.

Flu Shot Facts & Side Effects (Updated for 2019-2020)
https://www.livescience.com/40279-flu-shot-information.html

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Thanks John, the article did help, I was not able to find any info on vaccines directly having any influence on SFN so I would suppose there is no known connection. Helen

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I have the burning in the feet and the weird sensations in my legs at times. I have all sort of test and my neurologist has not wht I have except I don't have PN. The neurosurgeon , who wanted me to do these tests, mostly muscular, since I have atrophy in one leg has seen me again and says he thinks I need surgery.
It is major surgery involving the L4 and L5 plus cleaning out where the nerves go. He thinks it will help me, but I'm not sure about the burning in the feet. I have read if you find where your SF is coming from you can help it. Has anyone had this type of surgery and it helped? He said there is nothing else for me to do except surgery as I've done PT and everything else for the last year.

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Peggyn, have you had the punch/skin biopsy test done? The other tests for neuropathy can test negative, I was originally told I had arthritis in my feet, legs and hands which I knew was not the case so I sought out another neurologist who diagnosed me with SFN.

Liked by iceblue

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@peggyn

I have the burning in the feet and the weird sensations in my legs at times. I have all sort of test and my neurologist has not wht I have except I don't have PN. The neurosurgeon , who wanted me to do these tests, mostly muscular, since I have atrophy in one leg has seen me again and says he thinks I need surgery.
It is major surgery involving the L4 and L5 plus cleaning out where the nerves go. He thinks it will help me, but I'm not sure about the burning in the feet. I have read if you find where your SF is coming from you can help it. Has anyone had this type of surgery and it helped? He said there is nothing else for me to do except surgery as I've done PT and everything else for the last year.

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@peggyn I certainly understand your concern. Nerve compression at the nerve roots and spinal cord compression can cause burning, stabbing or electric shock type pain and muscle atrophy. Surgery at the lumbar area is also a more difficult recovery because that area is bearing your body weight, and any twist or leaning puts pressure when it's trying to heal. You might want to get other opinions. If the leg atrophy is due to nerve compression, decompressing the nerves may help. Depending on how much nerves have been damaged affects the outcome of the recovery. It's possible to rebuild muscle mass if the nerves are not permanently damaged and if this has not been going on for a long time. I am a cervical spine surgery patient, and I had all of these types of pain and muscle atrophy in my arms and shoulders from spinal cord compression. It is almost 3 years since my surgery, and I have regained most of the lost muscle, but not all of it. It may still come back. Time will tell. I did also have leg pain and pain all over my body from cervical cord compression, and that confused a lot of doctors because they expected me only to have arm and neck pain from the injured level. I had some slight instability, and gait abnormalities when the vertebrae had slipped out of alignment. My PT could realign it and I would walk better again until the next spasm. If you have not had imaging of your entire spine, it might be a good idea to see if there are other problems that are being missed. There are also some issues with pelvis alignment and dysfunction that can cause sciatic issues and they are not spine related and you can can that in addition to a spine problem. I've had my pelvis create some of that pain and been able to resolve it with physical therapy. Here is a link on that issue. https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

For me, surgery fixed all my pain. I do have a bulging lumbar disc that is asymptomatic at this time. You may also want to ask what your future will be like if you do not have decompression surgery. Would they predict a wheel chair and would you have disabilities that affect your ability to function? I know this is a big decision. Here is a link with a patient story from my neurosurgeon at Mayo about teen swimmer with a lumbar issue. I've included my patient story too. Surgeons can't always promise that surgery will fix pain and they tell you that decompressing the issue will help keep it from getting worse. I knew that all my pain was spine related even though it confused a lot of doctors. I paid attention as my symptoms developed and was even able to change where my pain was just by turning my head and I could reproduce it. The lumbar area doesn't have the mobility for that, but think back about how things started and developed for you. With my bulging lumbar disc, I have been able to rotate my spine and have it reset itself with an audible sound and stop sciatic pain. The stronger I am with my core strength, the less of these problems I will have and riding my horse is great exercise for that just at a walk. My surgeon told me core strength is the best way to support the spine and possibly prevent future surgery. There are therapeutic riding programs that use horses to build strength. I'm not suggesting this for you in your current condition, but wanted you to know in case it would help with rehab down the road.
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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@helennicola The punch biopsy is the gold standard for diagnosing SFN. I found that out the hard way. Had four misdiagnoses before I had the biopsy done. By that time it was too late for me. Nearly all nerves gone and sweat glands too in my feet. My feet are on 🔥 all the time. They look like they've been through a "meat grinder". So far mine is idiopathic…Pam

Liked by rwinney

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@burningfeetinphoenix

@helennicola The punch biopsy is the gold standard for diagnosing SFN. I found that out the hard way. Had four misdiagnoses before I had the biopsy done. By that time it was too late for me. Nearly all nerves gone and sweat glands too in my feet. My feet are on 🔥 all the time. They look like they've been through a "meat grinder". So far mine is idiopathic…Pam

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Pam
Don't forget to speak with your Dr about lidocaine infusions in case you are a candidate and it may provide relief.
Rachel

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@rwinney I will also ask Dr. about the Lidocaine infusions. I thought you said they did not help you? I did find a study on them which does not have a date. It is about Lidocaine and Ketamine infusions You can Google it below. They did use IM not IV but they explain why. Good technical info. I am about ready to try anything…I just do not want to take the drugs with side effects…Pam

Intravenous Therapies in the Management of
Neuropathic Pain: A Review on the Use of
Ketamine and Lidocaine in
Chronic Pain Management
Harsha Shanthanna
McMaster University, Michael DeGroote School of Medicine
Canada

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@burningfeetinphoenix

@rwinney I will also ask Dr. about the Lidocaine infusions. I thought you said they did not help you? I did find a study on them which does not have a date. It is about Lidocaine and Ketamine infusions You can Google it below. They did use IM not IV but they explain why. Good technical info. I am about ready to try anything…I just do not want to take the drugs with side effects…Pam

Intravenous Therapies in the Management of
Neuropathic Pain: A Review on the Use of
Ketamine and Lidocaine in
Chronic Pain Management
Harsha Shanthanna
McMaster University, Michael DeGroote School of Medicine
Canada

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Hi Pam

After not receiving as much relief as I had hoped in over 3 months, I became very frustrated and decided to skip a weekly infusion to better gage the relief and my progression of the disease. It was a miserable (more than usual) week and proved to be a valuable lesson of learning. I'm back to the grind on 2nd to last highest dose and feel I receive 20-40% pain relief, given the day. It is a complimentary piece to my overall pain protocol… until I feel its not doing enough or im ready to try something new. Ive come to realize looking for perfection when perfection doesn't exist has been an eye opener with SFN. Also, for me personsally, I experience pain, burning etc… through my head, neck, shoulders, arms, hands, hips, legs and feet. Thank you for the link. I will see if I've read it before or not. Have not forgotten my protocol, will get to you soon. Hope your day is tolerable.

Rachel

Liked by Lisa Lucier

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@rwinney

Thanks Pam! This is great.

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Hi Pam
Easier to attach photo!

FYI…these are my personal product choices as of now.

*Subject to change

Happy, healthy day wished for you.
Rachel

20190928_092608

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